Loose Strife

I hate to be the bearer of bad news, but this past week has been the pits for Laura. Laura’s 2nd chemo round seemed to start out well, but it’s been down hill since Monday. The nausea and vomiting are back with a vengeance. Every morning and now often throughout the day. We’ve tried two drugs and will try a third starting tomorrow. I’m getting angry with her oncologist.
Laura is awfully disheartened. After throwing up for most of the past 6+ weeks, she’s really shaken, I think. Now it’s down to just a pack of jello per day and one or two Ensure drinks. She’s not losing weight (last we checked), but I wish I could convince her to have some rice or tea or something. After a long period of nausea, I think there’s a psychological effect where the mind just convinces the body that nothing is safe except for a couple comfort foods.
In addition, she has troubles swallowing — especially liquids. As I said in a previous post, this is apparently a common side effect of her chemo drug. But it’s a big disincentive to eat.
This has left her weak and resting all day. Earlier in the week she was up and outside. Yesterday and today she was up a couple times to visit guests or sit at the table with us, but for the most part she’s in the recliner resting — without the inclination to even read or watch TV.
So, do consider giving her a call to let her know you’re rooting for her.

On the brighter side, being home with the kids has been really good. Instead of preschool and day care on Friday, the girls and I went traipsing all around meeting with friends, baking, taking a dance class and generally having a great time. Yesterday Natalie took Lily to the malls to buy some winter clothes and she had a ball. I’ve enjoyed putzing around the house with oddball jobs and finally cranked up the chain-saw this afternoon, which was fun. My rye and vetch cover crop has come up thick already, thanks probably to the mild autumn so far. Joe has now refinished three pieces of furniture that he brought up in pieces from Virginia, and they look great. And I picked up a bookshelf and finally unpacked all our boxes of books today. So our place is looking a little more homey. And the Red Sox won and the Patriots keep winning and the fall weather has been beautiful.
I’ll finish with a story from last night. With Laura sleeping in the recliner, I sometimes check my email before going to sleep and leave the laptop lying next to me on the bed. (No psychoanalysis, please.) Anyway, last night at just about 3AM, I was sound asleep as time was about to fall back an hour. I wish that there was some magic where you could literally relive that witching hour instead of just set your clock back because in the quiet of my deepest sleep Lily let out a blood curdling scream for “Daddyyyyyy!” and I bolted out of bed like a bat out of hell. And my laptop bolted, too, flying clear across the bedroom and smacking down on the hardwood floor.
Lily had wet her bed. No big deal. But my laptop with all my university files is dead dead dead. All I can say is good timing. Won’t be needing those files for a while anyway.

We had planned to go back to our old haunts in Northampton for trick-or-treating. Our old Northampton neighbor is famous for Halloween. Kids are trucked in from neighboring towns to go door to door and everyone loves it. But Laura was sick and worried about leaving the house. So we changed plans. I took the kids to town (Ashfield) where maybe a 100 local children sort of paraded down Main St, led by a hearse and fire truck, stopping at the dozen or so house and shops for candy. The event finished with donuts and cider for everyone at the fire station, a haunted house for the brave kids (not mine!), and a costume contest at town hall.
If there wasn’t enough evidence that my daughters are cut out of different molds, now there is for sure. Lily hesitated to walk to the doors for treats and didn’t like the ugly costumes, but squealed with delight whenever she spotted one of her new friends — of which there were many. Naomi was in her element: pointing with glee at every new costumed character and striking up conversations with strangers, doing a 2-year-old’s best effort at sprinting to the next doorstep at the sight of another candy bowl, and eagerly climbing up the red carpet steps to wave to the crowd at the costume judging. A few more pics in the photo album.

Laura is doing OK. 2nd round, day +5 and she’s still wiped out and generally doesn’t feel well. Her back is worsening again, although she doubled her pain meds recently. But her main gripe is just that she’s tired of the chemo screwing up her appetite and eating. I’ve learned that eating discomfort and lack of appetite are typical side effects of her particular “dense dose” chemo drug. Laura’s just tired of eating jello for a month and discouraged with the prospect of this continuing for the foreseeable future.
Indeed this is a long haul, likely to continue at least through the end of the year, regardless of her next set of scans. She’s too beat up by the drugs to do much more than sleep during the weeks between infusions, so it’s important that someone else is around for the kids, etc. Fortunately Natalie and Joe are here right now and we’ve had at least one of our parents around since early September.
But if this continues for months at least, we decided that it would be better to make a more significant change. So I decided today to take a leave of absence from the university. Laura encouraged me to do it — which was an important factor. My department has been extremely supportive, so the only downsides seem to be a loss of research momentum and less one-on-one support for my PhD students. But my students are sharp and I’ve found good backup advisors for them, so I think they’ll be fine.
In the end, given that I can keep our health care and I’m lucky enough to be able to afford the time off, it seemed stupid not to do so. It’s a tough time for Laura and she needs support. It’s stressful for our kids to suddenly not have their mom much engaged in their lives — maybe Dad can make up some of that loss. I haven’t been very productive at work. I’d rather be at home. Who knows what the future holds. So really why not?

October pictures have been added to the photos site. Of course I’ll add in the Halloween shots in a few days.

I think Laura’s doing much better handling day +1 compared to the first round. She’s taking a special post-chemo anti-nausea drug and hadn’t had any nausea problems. She has been eating similar to before the infusion — which isn’t spectacular — but she’s getting good nutrition and sufficient calories. And maybe Laura also seems to be doing better during this second round because her health is improving.
There’s good reason to believe that her metastases are coming under control. A few days ago, before her second round, I mentioned that the horrible morning sickness and her cough were both mostly gone. Yesterday the doctor did not find any indications of fluid around her lungs based on a crude physical exam. (It’s still there, but probably not worse, and maybe reduced.) And today we got the news that a blood test for a cancer marker was down compared to the beginning of the month. The marker isn’t very reliable, but it’s another hopeful indicator.
Laura will probably get another CT body scan before her next chemo round and those findings will be very important.
So here’s hoping…

Just a quick note that Laura and I spent the day in Northampton for her second round of chemotherapy. As is standard practice, Laura’s blood was checked in advance and her white blood cell counts were way up since the nadir a week ago. “Excellent” levels according to her oncologist. So that means she’s in good shape for another round.
It was a long day, but fine. Laura slept mostly and continues to do that at home. We know what to expect this time and she was given a new nausea drug, too. I’ll post later to let you know how she’s handling it.
(10 to 1 in the bottom of the fifth! Go Red Sox!)

Some mixed news. Laura has not thrown up most days this week. Coincident with this is that her habitual cough, related to the fluid around her lungs, is now rare. Cough and up chuck were always linked in the morning, so their mutual absence is definitely a positive sign that something might be improving and either the chemo or the estrogen suppression might be working. And Laura’s appetite is a little better — she’s added a few more simple comfort foods.
But Laura’s back pain is worse and different. So that’s not so good. She had increased her pain meds earlier this week, but still is uncomfortable. Yesterday the oncologist encouraged her to increase it further. Laura’s worried about the side effects of the narcotics, but the truth is that the side effects of pain are worse.
On Friday Lily came down with a cold, including a fever, which made us a little nervous, but the doctor told us not to worry. Still, Laura had planned to have a chat with the kids to introduce the word “cancer,” tell them that her hair was going to fall out, and to reinforce some basic points that worry kids like “it’s not your fault” and “cancer isn’t contagious.” So how in the same breath do you tell your child to stay away from Mommy because you might make her more sick?
Well, you don’t. And Lily was fine today. And Laura shared her new head scarves and wig with the kids to much delight. Lily exclaimed at dinner, “Daddy, I got to wear Mommy’s wig! For when she’s bald!”
These are, after all, two girls who enjoy perhaps nothing better than dress up, so wearing these “silly hats” was sheer delight.

Just a quick note: Laura got her blood tested today in advance of her second chemotherapy treatment next week. Her white blood cell count was very low, which is a common effect. This means she’s more susceptible to infections because her immune system is compromised. She now needs to closely monitor her temperature and avoid contact with people who are sick. (If white blood cells become too low or she gets an infection, then there are treatments to deal with it.)

Laura asked me this weekend to post a thank you on this website to everyone. Laura’s been accumulating a pile of cards and notes with the intention of sending replies, but it’s got out of hand and probably won’t happen. Being the dolt that I am, it hadn’t occurred to me that I should be doing that! Sooo…
Thank you so much for everything that you all have done for us! I can’t recollect it all for sure. There’s just been too much. But it’s been wonderfully varied from cards to flowers. From soups and breads to candies and cookies. Plus books and care packages and on and on. One friend even bought us a trash can (we really needed one). My neighbor made Laura a short movie. A friend from town shared a jar of cider pressed from her apple tree. Adversity seems to bring out the best in people. Thank you all.

I’ve received a request for an update. (For the record, you all should assume that no news is good news — or at least the same news.)
Things are fine in the Kulp household. My mother went back to Virginia last Tuesday. She was a tremendous help during tough times. Laura’s father Joe is back up in Ashfield with us.
We’re at a strange point where I feel like we’re just about self-sufficient, but Laura’s too fatigued to do much, including driving, and she still can’t pick up Naomi. It’s nice to have Joe around to help with odds and ends, but with child care for the kids during the week, it seems like overkill. Still, it’s good to have him here just the same!
Laura is OK. Well enough to read the latest Harry Potter last week. The main issue is still that she throws up every morning. It’s now been a month. I spent last week contacting more doctors, but still no dice. In addition to that, Laura’s appetite hasn’t returned since chemo. She says she has no appetite for food and it’s not satisfying to eat anything. So she’s on a regular diet of jello, chicken soup, and nutritional supplement drinks. Mmmm.
Let’s see, what else? This weekend I had fun with the girls on separate activities. I went for a hike with Naomi at a park in the Berkshires. And Lily and I went to a nearby children’s art studio. I know it’s October, but we’re already pumpkin’d out, apparently, because all the kids wanted to make turkeys. (As an aside, the wild turkeys around here are an embarrassment to their species. I often see a flock of a dozen or more, sometimes standing in the middle of the road waiting to get hit. I remember true wild turkeys in Virginia in my youth as being wily and fast.)